Nikki' Story

(Updated 10/2014)

For those of you who would like to know my medical story: I was diagnosed with Medullary Thyroid Cancer on April 6, 2010, after a fine needle biopsy. After additional blood work, it was determined that I had Sporadic Medullary Thyroid Cancer, which means that it is not the hereditary version.

I had spent the previous two months having many different tests done to determine why the right side of my neck was stiff which had been going on and off since last summer. Also, I had a sore spot above my collarbone near my neck. My excellent chiropractor, Dr. Ron Kulik, (who is a family friend and also treats my parents) determined after a few months of trying to help me with adjustments, that I needed to see another doctor to focus on thyroid or lymph nodes.

Other doctors didn't seem to think it was serious, but we had an ultrasound on the sore spot (nothing unusual found), an x-ray on the neck (nothing found), general bloodwork (nothing unusual found), and a MRI on the neck (which showed cloudiness on the right side of the thyroid and suspicious nodes). After talking to a surgeon, he recommended a fine needle biopsy. When I went for that biopsy in mid-March, the doctor decided that he didn't want to do the biopsy because he didn't feel that the node was suspicious. We were quite surprised. My parents were not satisfied, so my mom called our family doctor. That doctor then recommended a full neck ultrasound. The results did show a 2 cm node on the right side of my thyroid and enlarged lymph nodes on the right side. I was then sent back to the surgeon who sent me back to the biopsy doctor for the April 6 biopsy that he did do.

After the biopsy was performed, the doctor left the room to study the cells. He came back soon after to tell us that I had thyroid cancer. He then explained that I also had a rare kind that might be hereditary and that we needed to see a surgeon. Hearing "you have cancer" was quite a shock to me, that's for sure. But after some tears that first evening, I actually went to watch a soccer game at my high school that same night. I remember thinking that I wanted to make this a positive experience, and I remember my mom telling me that God would help. My friends and family were supportive right from the start.

After some urgent medical discussions with doctors, my parents decided that my medical care should be conducted at Johns Hopkins Hospital in Baltimore, Maryland. Dr. Douglas Ball became my endocrinologist, referred to us by Dr. Ralph Tufano, the Hopkins surgeon we were referred to who took my case. Dr. Tufano then referred us to Dr. Sara Pai to be our primary surgeon since Dr. Tufano was going to be traveling a lot during the time of my treatment/surgery timeframe. Luckily, when it was time for my surgery, both Dr. Tufano and Dr. Pai were in the operating room.

My first surgery (the only cancer surgery so far) was very extensive and took place on May 17, 2010. Luckily before surgery we found out that I didn't have the hereditary version of Medullary Thyroid Cancer, so that eliminated a few surgical issues. Still, the cancer had spread beyond the lymph nodes on the right side, and the doctors had to remove some things that we hadn't been prepared for. They had to remove the nerve to my right vocal cord, so I had a voice that sounded something like laryngitis. They had to remove a few more nerves/muscle tissue (like the nerve to the right side of my diaphragm), so I also had some numbness in my right shoulder/neck area. The surgeons were awesome though.

During the summer, I had to deal with discussions of radiation treatments as well as a vocal cord procedure and speech therapy appointments to try to improve my voice. We also were honored to meet with Dr. Sam Wells, at NIH, who specializes in this rare cancer. He was very nice and talked about possible clinical trials that I may be able to qualify for after I turn 18. There was only one pediatric trial available, but I didn't qualify because I didn't have the hereditary version.

At the end of July, I was at Johns Hopkins for two days of more tests/scans which included a neck ultrasound, a bone scan, a ct scan on the neck and two MRIs. It was quite an experience to have so many tests in 1 1/2 days.

After the results came back, discussions followed regarding whether I should have radiation since clear margins weren't achieved everywhere during surgery, so I had microscopic cells left behind. Plus the ultrasound showed some suspicious nodes on the left side (which turned out later not to be cancer, thank goodness). Dr. Tufano felt especially strong that I should have radiation, and a compromise was decided that I should have radiation on just the right side which would enable a surgery on the left side if necessary. We understood that radiation doesn't really help with Medullary tumors, but it might be successful with microscopic cells.

In the meantime, on August 26, I had surgery to improve my voice that was very successful. Another great doctor at Johns Hopkins, Dr. Lee Akst, performed this surgery. He injected a durable solution into the right vocal cord to thicken it up which then allowed the left vocal cord to hit it more strongly. My voice improved immediately by that evening, and my voice sounded close to my "old" voice within a week or so.

Also, on September 15, I had a PET scan. The doctors hadn't really focused on this test, but my mom had asked a few times about why one wasn't being done. Dr. Ball decided to do one at this time. The scan showed no suspicious nodes on the left side which was good news. But it did show a new suspicious node where surgery had been done. This confirmed that we had to try radiation in that area even if it didn't take away the node; perhaps it could stunt its growth as well as stop other cells from growing.

In early September, we found a wonderful radiation oncologist based at the INOVA Loudoun Hospital campus in Loudoun County, near us. Dr. Kin-sing Au started my radiation treatments on October 4. I had 6 weeks of treatment, every day after school from Monday through Friday. The process wasn't that difficult. My mom and I went each afternoon. Each treatment only took 6 or 7 minutes, but there was a little setup needed. Sometimes I even fell asleep on the table. The nurses were so happy that I was so comfortable. My skin did discolor after awhile on the right side, and there was even some peeling. I didn't really have any pain (like intense sunburn), probably because of the numbness that I had in that area from the surgery. So we laughed about how this was a good thing for me. I was tired but I still went to school almost every day and just took a nap when I got home from radiation if I needed to. One lucky thing for me was that there was a great discount shoe store near the oncologist office, so my mom and I (and sometime with my godmother) went shoe shopping a lot after radiation treatments.

In August 2010, my parents had found out about a natural supplement called TBL-12, which is made up of mainly sea cucumber. My mom had met another mom of a sporadic medullary teen patient who was taking it. After much research and meeting the distributor, my parents encouraged me to start taking it. The American Cancer Society indicated that sea cucumber can help the immune system and increase energy, so that helped with our decision too. Many people had said it helped put their cancer in remission, and the supplement was being studied in a few FDA trials. I started taking TBL-12 in mid-September 2010. We think that this supplement did help with my energy during radiation (I didn't miss one day of school during the 6 weeks).

With 4 treatments left, I actually experienced a special Make-a-Wish trip to Nashville, TN, to watch the CMA Awards and meet some country music singers. Dr. Au said I could go for 3 days, without radiation, which was so nice of him. The trip was amazing, and people were so shocked that I was finishing with radiation and still able to take the trip and do everything that was planned.

In early January 2011, I had another series of scans (MRIs and CT scans). After some confusion during January about test results before and after radiation, another PET scan was done in mid-February. The suspicious node in my neck was actually not showing up as cancer anymore, and there wasn't anything else on the right side of my neck either. So it looks like the radiation did help! (Maybe the TLB-12 helped too.)

In late February, my parents were able to obtain an appointment with Dr. Tuttle, who is another Medullary specialist who practices at Sloan Kettering Hospital in New York City. Dr. Ball helped us get the appointment. Dr. Tuttle was so funny and very positive about my future. He said that this cancer can stay quiet for years, that there are more treatment options coming up, that I could go to college and enjoy myself and that a treatment would only be undertaken if something was going to hurt me. He gave us a few examples of patients with very high calcitonin levels (which is what this cancer produces) where no treatments were being done or the cancer couldn't even be found. One patient has a calcitonin count of one million! He and Dr. Ball work together a lot, and we are so grateful that we have amazing doctors taking care of me. We may see Dr. Tuttle in a year, but will stay with Dr. Ball and the other doctors at Johns Hopkins.

We talked to Dr. Ball at the end of February, and he decided that I didn't need any scans until mid-July. It was a huge relief. My parents and I were so excited. Now we can plan for spring break, graduation and summer vacation without worry of test results. We also saw Dr. Ball in early April to go over my case and talk about college. It was funny to hear him say that he's amazed at my progress over the first year, since surgery. He's very happy that I'm doing so well. We talked about the college experience that I want to have, which means I want to go to college a few hours away from home. He was supportive of the idea, so we left his office with big smiles on our faces.

The scans were done in mid-July (which included 3 MRIs and a CT scan). We received great news - no progression of cancer - only a few small suspicious spots still - and one spot actually got smaller! Dr. Ball was shocked, and we were very happy! I got the "okay" to go away to college, and the next scans will be in December.

My voice had been doing well but had started to weaken in the spring. After seeing Dr. Akst again, I wanted to have another injection. So we scheduled it for August 2011 so that my voice would be strong again for starting college. The procedure was successful, and I'm so grateful for Dr. Akst and his skills! This is an outpatient surgical procedure, so it's still scary with going under full anesthesia, but it works; and I'm so grateful!

On December 20, 2011, I had my 3 MRI's (neck, abdomen/pelvis and bones) and 1 CT-scan of my lungs. Johns Hopkins offered me a new MRI machine that made the whole process faster, which was so great! Instead of being in the MRI machine for about 3 hours, it was only about 1.5 hours. My parents and I went back up to Hopkins on December 22 to hear the results of the tests. I was so nervous because I didn't want to miss out on my 2nd semester at college, and I didn't want chemo or surgery. I told my parents that I would cry no matter what the results were - and I did. Dr. Ball told us right away that my results were really good, so I cried a little out of relief. It was so great to hear the good news. The bottom line is that the tests showed no new cancer and also showed that nothing suspicious grew at all. There are 4-5 small spots that are suspicious (a few very tiny), and they haven't changed since my diagnosis...so really we aren't sure what those spots are. One spot in the upper neck area was being watched for over a year, and then this time the scan showed that it had shrunk! Dr. Ball said it isn't cancer. Again, this was another big surprise (on top of the spot that shrunk in July). Dr. Ball continues to be happily shocked with my progress.

I know that my good reports are due to my positivity, my faith and the TBL-12 supplement that I am taking every day. Even my early January TSH blood work came back "normal." That was so great too, so I can stay on my same Levoxyl dosage. Now I don't need scans until June 2012. I will have blood work done in March just to monitor the counts. So, I plan to fully enjoy my spring semester at college, and I even want to bring Bite Me Cancer to my friends at college. I'm excited about what my foundation can accomplish this year and in the future.

I had my scans in late June, 2012. Everything came out stable - no new nodes and no new growth in any suspicious nodes that are still being watched! My bloodwork in June showed that the calcitonin is still high, but nothing can be done until tumors are found. So I continue to be very positive and keep moving forward. I'm excited for my Bite Me Cancer events and meetings this summer. The next set of scans will come in December 2012.

In August 2012, I had another vocal cord procedure to enhance my voice. My voice was weakening again, and I really wanted it strong for my second year of college. Dr. Akst again performed the procedure, and it worked. I really hope that this time the solution can last longer.

From mid-November to mid-December, I had a variety of labs and scans done for an update to my condition. Again, I had 3 MRIs and 1 CT-scan along with labs to measure my TSH, Calcitonin, CEA, T4 and Calcium. Although my Calcitonin and CEA have been steadily increasing this year, the suspicious small spots haven't grown and nothing new has shown up. I am so happy.

In November 2012, I had my blood work done. The calcitonin had increased again. So we were a little anxious with the scans in December. BUT nothing was shown to be growing! Everything is stable again! The doctor suggested a bone scan to make sure nothing was being missed due to the increasing calcitonin, so that was done on January 4. The results showed that there was no cancer in my bones. We are all so grateful! Next bloodwork is in early March and then my normal batch of scans in mid-June.

In May 2013, I met with my vocal cord surgeon, Dr. Akst at Johns Hopkins because my voice had weakened again. I really wanted a vocal cord implant for a more permanent solution, but I had to wait until my June scans because the implant would need an incision and we had to make sure the cancer wasn’t coming back in that area. I did have my 3 MRIs and 1 CT-scan in mid-June, and the results were great. Everything was stable, and nothing new had grown! Also my calcitonin and CEA had both gone down slightly, although they are both still high. It was all such good news, and I knew all the prayers (and the TBL-12 supplement) must be working. I was able to go ahead with the vocal cord implant pre-op to prepare for surgery on July 25.

On July 25, 2013, I had to be fairly awake for the vocal cord surgery, which made me nervous; but I knew I had chosen to do this surgery, so I was ready. I was going to help Dr. Akst in surgery with hearing my voice to decide on the best sound. That seemed very weird, but it worked out great. One of the doctors told me that I was crying when I heard my “new” voice and that Dr. Akst told me to not cry because he wasn’t done yet. That was funny. Apparently, I also told everyone in the operating room that Dr. Akst was the best doctor ever! My voice sounded great right after surgery, before the swelling started; so when my parents came to see me in post-op they were shocked by my strong voice. Then my voice got raspy later that evening and continued for about a week. After that, it took a few more weeks for my voice to settle down; and it’s been great. I went from ½ octave to 2 ½ octaves for my range. The medical staff is very happy with how great the surgery worked. I can’t believe that this is permanent, which seems impossible. I know I feel so much better already because I’m not so tired each evening after trying to push my voice every day, and I’m not having to drink water all the time too. It’s been so great. So, now I go back to college and deal with more scans in December.

On December 18, 2013, I went to Johns Hopkins to have all of my scans. Again, I had a CT-scan for my chest and three MRI’s. On December 21, we received the good news that the cancer is still showing “stable.” Yes, there are suspicious nodes in the chest area and lungs, but nothing has grown and nothing new has shown up. The bloodwork indicates cancer cells are present; but it’s great to know that everything remains stable. I am so happy to not need any treatment once again. My next scans will be a little later than the normal June scans because I know get to study abroad for college and don’t get back until early July (after a special vacation with my parents). It’s so great that I can still do everything and experience so much even with cancer.

In July 2014, I had all my scans again (3 MRIs and a CT scan). Unfortunately, a small new spot was showing in the lower lobe of my left lung. Recommendations from doctors went all over the place – one wanted immediately oral chemo, one wanted lung surgery, one wanted to wait and see. It was an emotional time for my parents and me. I had to add a lot of doctor appointments to my early August schedule to figure out what to do. I even went up to Sloan Kettering Cancer Center in New York City to talk to the surgeon about possible lung surgery. He convinced me that this was the best approach to take instead of oral chemo.

Unfortunately, during surgery he saw that the cancer spot had gone over a little to the upper lobe; and he didn’t want to remove the whole left lung. What I learned is that you can’t just take out a small chunk of lung; it’s either a whole lobe or nothing. So, then I had to go back to my Johns Hopkins doctor and plan for oral chemo. At this time, I was also planning to go back to college for my senior year. There was so much going on and quite a rollercoaster ride of emotions and schedules.

In October 2014, I started the oral chemo pill. There are 2 pills for Medullary Thyroid Cancer, and both were approved just in the last 2-3 years. So far, no side effects which is great. I feel better too! This pill is something taken each day to turn off a signal in the specific cancer cells. It will impact some other cells too but not like traditional chemo does. I have to get labs done each month or so as well as an EKG every so often. I also have to take my blood pressure every day to make sure the pill isn’t impacting my heart in a negative way. I am very focused on my senior year and having lots of fun as well, so I’m hoping that this oral chemo pill is something I can take for a long time to help me.